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Patients can’t anticipate specifics
Living wills don’t work; furthermore, it’s a waste of time to promote them to patients, according to researchers at the University of Michigan (UM) in Ann Arbor.1 Even aside from what’s best for patients, health care staffers who spend time and effort teaching patients about living wills may fall victim to a false sense of complacency, the researchers say.
They base their conclusions on a comprehensive review of hundreds of studies of living wills, end-of-life decisions, and the psychology of making choices. The authors are criticizing a legal instrument that has become so ingrained in American medical culture that federal law requires hospitals to tell their patients about living wills, and the laws of almost every state specifically recognize the validity of living wills.
Carl E. Schneider, JD, the Chauncey Stillman Professor of Law at the UM School of Law, says living wills don’t fail for lack of effort, education, intelligence, or good will. They fail because of basic traits of human psychology, he says. For instance, studies show that people have great trouble predicting their own preferences about even simple, everyday things like what snacks they will want or what groceries they will buy next week.
"If they have trouble predicting what is familiar," Schneider asks, "why should we expect them to succeed when they are predicting what they will want in circumstances they have never experienced and can’t foretell?"
Schneider and fellow researcher Angela Fagerlin, PhD, a research scientist with the UM School of Medicine and the Veterans Administration Ann Arbor Healthcare System, recently released a study in which they analyzed how living wills actually were used and how much they reduced the end-of-life debates they were intended to address.1 The researchers’ basic conclusion was that a living will is "a nice idea, but it doesn’t work," Schneider says.
The living will, Fagerlin notes, was designed by bioethicists who wanted to give patients a chance to spell out what treatment they would want and what treatment they would reject if they became unconscious or unable to make their own decisions for some other reason. The idea of the living will is to allow people to maintain control even at the end of life.
Unfortunately, Schneider says, courts have proven reluctant to uphold living wills, largely for good reason. "The courts recognize that the document was signed before the patient was in the current state and before they could even understand what specific issues are being contested," he says. "Courts are likely to say that the living will is not legally binding."
Fagerlin notes that a living will likely would not have made any difference in the Terri Schiavo case in Florida, in which a patient’s husband and parents fought a long legal battle over whether she should be kept alive. The media have suggested that the Schiavo case was a good example of why everyone should have a living will; but in reality, "if she had had a durable power of attorney saying she wanted a particular person to make that decision for her, then there would be no conflict," Fagerlin says. "That is a good example of the usefulness of a durable power of attorney vs. a living will."
Schneider says he can imagine circumstances in which living wills may be useful for patients facing imminent death who know their medical circumstances and who have strong and specific beliefs about them. But far more often, he says, living wills offer a false promise of control over end-of-life treatment. The best patients can do, the researchers argue, is to use a durable power of attorney to appoint someone to make decisions for them when they can no longer make their own decisions.
Schneider says the way many health care providers encourage patients to complete living wills is part of the problem. Often, the living will starts as a blank form for patients to fill out in writing, stating their individual preferences. The instructions might suggest that patients write down whether they’d want to be kept on life support machines if they had a catastrophic accident or were terminally ill.
When a living will is called into play, it is very common for family members and others to find room for argument, Schneider says. Is the patient "terminally ill" as required to invoke the living will? If the doctor says the patient has a 50% chance of living six months, a case can be made on both sides regarding whether the patient is and is not terminally ill. And what about pain relief? Does that include inserting a Foley catheter to relieve a full bladder?
"People sign these documents thinking they have made some important decisions, but in reality, they have no way to anticipate the specific circumstances," Schneider says. "You end up with someone saying, But he has a living will,’ and someone else saying, Yeah, but it doesn’t apply to this situation here.’"
But health care institutions cannot instruct staff to stop promoting living wills altogether because the federal Patient Self-Determination Act requires hospitals to tell patients about living wills and other advance directives. Fagerlin and Schneider instead recommend focusing much more on the alternatives to living wills.
"Durable powers of attorney only require a few simple choices, and they don’t differ significantly from the existing system of allowing family members to make medical decisions about incompetent patients," Schneider says. "They also allow the decision maker to use the information about the patient’s condition that’s available at the time a decision is needed, rather than asking the patient to guess about something far in the future. And they’re inexpensive."
Legally, the hospital is relieved of the burden to make decisions for the patient when a durable power of attorney is in play, he notes. The durable power of attorney is legally clear and enforceable — everything a living will is not. "They're documents that the court understands, and the court can just say yes," Schneider explains. "But when you present them with a living will that has all these vague terms and health care situations the court is unfamiliar with, they often start looking for someone else to make the decision for them, like the bioethics committee. The ball comes right back to you."
1. Fagerlin A, Schneider CE. Enough: The failure of the living will. Hastings Center Report 2004; 34:30-42.